Introduction: Medical care and treatments of patients suffering from slowly-progressive neuromuscular disease (NMD) mainly aim to improve health-related quality of life (HRQOL). To date there is no French HRQOL-measurement tool specifically designed for these patients. Recent works allowed developing a new questionnaire of 26 items named “Quality of Life in Neuromuscular Diseases” (QoL-NMD). It is structured in 3 domains and was constructed using focus groups: Delphi method and exploratory statistical analysis. Our objectives are to validate QoL-NMD using an independent sample and to calibrate the scoring system.

Conclusion: This study led to the validation and calibration of a new HRQOL questionnaire specifically designed for NMD patients. It can now be used in various clinical settings. QoL-NMD has been translated and culturally adapted to English but still require a psychometric validation abroad.

References:

Vincent KA et al. Construction and validation of a quality of life questionnaire for neuromuscular disease (INQoL). Neurology. 2007;68(13):1051-1057.

Burns TM et al. Quality of life and measures of quality of life in patients with neuromuscular disorders. Muscle Nerve. 2012; 46(1):9-25.

Graham CD et al. A systematic review of quality of life in adults with muscle disease. J Neurol. 2011; 258(9):1581-92.